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Old 06-15-2008, 08:53 AM   #1
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Marie1973 HB User
Question Hospice -please help

Hello all.I posted about a week ago under non small cell lung cancer concering my dad.I thank you all for your comments.

Since my post my dad has been hospitalized.On Sunday night (last week) I took him to the ER. He was coughing up blood & the doc said to rule out a blood clot or anything else.

Well they said my dad had pneumonia-no blood clot & treated w/ antibiotics.They ran a bunch of tests and laying on his back for the CT scan made him so out of breath that he could barely speak.His condition worsened rapidly.He was up to 36 respirations per minute.

He was admitted to the hospital and we had a biopsy previously scheduled for Wednesday @ the same hospital.
One doc felt he couldnt withstand the biopsy (due to not being able to lie flat.)The oncolgist said we could get around that.We did not do the biopsy.

We decided not to do it because dad seemed very weak and we felt treatment would be too much to take.Where his (baseball size) tumor is located is on the left side of his chest & has begun to interfere w/ his breathing.
The oncolgist has since said that radiation is generally ineffective against large tumors,and that if we did radiation it would cause swelling and interfere w/ breathing even more and make it worse.
Even though this is the same doc who on June 3rd said we should try chemo & radiation because they can be very effective together.He said a week ago-my dad was in much better shape and now he's a very sick man.
They decided that treatment would do more harm than good and would reduce quality and quanitity of life.
They refered us to the pallative care specialist but the doc said we can change our minds & opt for treatment at anytime.
I also asked about the new cyber knife procedure and was told my dad is not a candiate and they would still need a biopsy first.

Hospice set up for my dad to come home so he came home w/ me on Friday, after being in the hospital since Sunday nite.He's happier about being home and so are we.

He really seems to be get stronger.Last nite he got out of bed 3 times by himself. He says nothing tastes good.And I wonder what causes that.I thought chemo made food not taste good? Anyway he is eating & drinking okay.And his fever has gone away since the hospital.Also his respirations are under control at between 20 to 26 per minute.

Has anyone ever heard about hospice patients getting better? And should we go ahead w/ the biposy/treatment?
If they're saying he won't get better-isn't it worth a shot to try?

Any thoughts ,comments, suggestions are welcome

Thank you.

Last edited by Marie1973; 06-15-2008 at 08:58 AM.

 
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Old 06-15-2008, 08:36 PM   #2
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Re: Hospice -please help

How old is your dad? My MIL was 78 when she was diagnosed. she had surgery to remove a lobe and then it spread to her brain, liver and colon. We took her to the MD Anderson hospital in Houston, TX. They were wonderful. They did the whole head radiation for the brain...that was tough on her. Her head looked like it had been burned, and I guess it had....she was there for 2 months, came home....went back and started her chemo by mouth.......came home...chemo made her tooooooo weak to even function. Doc took her off. We had to take her back to hospital here because she got dehydrated and wasn't eating. drinking is very important when on chemo...she was three 3 days and doc said it had spread to her liver and was bad....we called hospice and they came the day after her hospital departure. She was neve in any pain, except for one day...that's when she told us to call hospice and get them to bring some pain meds.......we were shocked because she had never hurt!!!! She died 5 days later............so I think depending on the age, as to what you should do. All that treatment was too juch for her. She got down to 80 pounds and had stopped eating. Hospice was wonderful. We didn't want to kill her trying to keep her alive!! Ya know what I mean? And she didnt want it either.......hopice was a God send...........
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Old 06-16-2008, 06:44 AM   #3
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Re: Hospice -please help

Thank you Flint.Im sorry about your mother in law.My dad is 84 and has never been sick a day in his life-until now.
He's was always so active.
It's so hard watching him deteriorate like this.He even needs help walking & can't feed himself.This all happened so quick.
Just 2 weeks ago we were at Lake Quassy.We pushed dad around in a wheel chair because he was getting out of breath so quickly.
But at times he would get out of his chair and walk over to watch the kids on a ride.He even went on the merry go round.
I can't understand the progression of this disease.
Then a few days he seemed to be getting stronger-so I thought well maybe he's getting better.
You know you hear stories about people told they were given a certain amount of time & then lived for years beyond that.
I was told that you will have good days and bad days with this.

Then my mom was diagnosed with stage 4 breast cancer in June 2005.There was a point when they gave her 6 months.
They wanted to start chemo back then but she refused.
She was only on hormone therapy for a year & a half.
She just started the chemo & radiation in Feb. 2007.
For a time she looked weaker & sicker.-Now there's nothing but a tiny spot on her liver.She's 76.
She still gets chemo weekly and herceptin every 3 weeks then skips a week.I dont know if its considered remission?
But the doc says shes doing great.

Last edited by Marie1973; 06-16-2008 at 06:47 AM.

 
Old 06-16-2008, 07:17 AM   #4
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Re: Hospice -please help

That's wonderful about your mom!!! No one knows how much time you have. My MIL was never sick either and never been in the hospital. except to have kids. she was a smoker...but quit. she went down so fast!! You have to just go with your gut. We knew when she was getting worse and you will too. He may bounce back....you know him more than the docs and that's what you have to remember.
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Old 06-16-2008, 08:31 PM   #5
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Re: Hospice -please help

my mom has been on home hospice now for a little over two months. We were told twice it was a matter of hours till she passed. She had blue hands and feet, lungs were filled with fluid, but remarkably she bounced back from that. What we thought was going to be a week or two is now turning into months and looks like it might be more.

We've had weeks when we felt she was getting better and able to go thru treatment. She was walking with assistance, very lucid, but then she'll have a bad few days and we are bounced back to the reality of the situation. I'm not one for giving up hope however. The human body and mind is an amazing thing. Who knows what can happen. I do think it's getting her meds right...plus getting off the other stuff she was on.

Cherish the time you have. I think it's ok to hope for the best. I mean, the passing will hurt anyway. If having hope gives you some happier times, why not do it.

btw-small cell lung cancer dx about 2.5 months ago, large mass upper left lung, unknown if it's extensive. Mom couldn't take the PET or CAT scan...she couldn't lay flat

Last edited by mod_007; 06-17-2008 at 12:09 PM. Reason: replaced slang word

 
Old 06-18-2008, 07:55 AM   #6
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Re: Hospice -please help

My story with my father sounds alot like this. If you look for my posts you will see what I mean. My father was only 64 when he passed on May 29,2008. We brought him home from the hospital on April 9, 2008, he started Hospice and never got better. I feel when a doctor says a biopsy is too risky or will cause too much discomfort and they are not doing chemo or radiation they know there is just a small amount of time left. I am sorry to be so negative but when my Father was going through this all I wanted was the truth. My advice is enjoy your Father everyday and give him lots of hugs and kisses because this disease shows no mercy!

 
Old 06-18-2008, 08:53 AM   #7
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Re: Hospice -please help

As far as I know, hospice care is for people that will die and will not get well. I didn't know anything about hospice until my dad past away a few months ago. He was under hospice care. They will sit down with you and explain everything. Hospice is a wonderful, caring group of people!
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Old 06-24-2008, 07:04 PM   #8
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Re: Hospice -please help

I too agree with you on the doctors knowing the time frame. My mom went to the hospital via ambulance on Monday April 24th. She was admitted with Congestive Heart Failure, had been diagnosed with Stage IV lung cancer since late Feb. Doctor pulled me aside to find out about advanced directive, as he said this could be the beginning of many trips to the hospital of this nature. I had him speak to her, he went over hospice that day. I went on to find out about when she would be released from the hospital, he would not give me an answer until he received her medical power of attorney. She passed on May 3rd at home, peacefully, and on hospice. I believe in my heart, he knew she only had a few days, (he had not seen her prior to this hospitalization and she too had not been in the hospital but two times prior in her life). I feel the doctor was under the impression, she was beginning her journey and would pass either in the hospital or at home with hospice.

 
Old 06-29-2008, 10:37 PM   #9
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jeaniek HB User
Re: Hospice -please help

First I wanted to say how sorry I am to hear about your Dad (and everyone else's family)....

Hospice workers are irreplaceable help. I don't know what I would have done without the wonderful nurses that came to help me with my Dad.
The hardest thing with this disease is wondering how much time is left for the people we love....we think it, we ask questions, but nobody really has a good answer except for God. Instead of dwelling on how much time, I believe the best thing is to concentrate living in the time that is left. Enjoy your time together, share something special each day...
I have not heard anyone who has made a complete come back when on hospice care..but I have heard of patients living for quite a few years with their help. It depends on the patient and how well their body can fight this fight.

Each treatment not only helps but also helps deteriorate our bodies. There are a lot of treatment options out there, and a lot of tough decisions will need to be made...but in the end, your Dad will have to decide which route is best for him.
Chemo, Surgery, Radiation is hard and gets harder with every treatment...but sometimes can be worth it (or not), depending on what the doctors think the treatments will accomplish. I would make sure to ask what their "goals" are with these treatment options they are offering before making a decision.

My Dad died a little over a year ago from SCLC. He was only 56...when they found the cancer, it had already spread to his brain. My Dad chose the conventional route of Radiation and Chemo and had several treatments, which I did not agree with..but I stood with him during his fight....with each treatment, I saw my healthy Dad turn weaker and weaker..but eventually he pulled through and had a good 6 months of health - he reached the goal the doctors had for his cancer.
The problem was, that once he reached the goal, he was able to stop treatments..and with Small Cell, it is very aggressive and came back worse then before. There was nothing more after these treatments they could do for him...so he spent a few months getting progressively worse, until another doctor offered him a chemo treatment...which my Dad accepted. His already tired and weak body didn't respond well, and he died less then a month after. I'm not sure if the last treatment sped up the havoc that was already taking place in his body, but it sure did not help any.
If your Dad is going on Hospice, they have great alternatives to help him deal with all the uncomforts that he'll experience. They do not stand in your way of any decisions of treatments your Dad decides on and can be an invaluable source of information - I found I would get the best answers from the hospice nurses.
It'll be a tough ride...but
Take care and stay strong...
Jeanie

Last edited by jeaniek; 06-29-2008 at 10:40 PM.

 
Old 06-30-2008, 08:55 PM   #10
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Re: Hospice -please help

I am so sorry to hear of all the devastation in the families that have posted here. As far as hospice is concerned, their services are priceless! I couldn't have remained sane this long if it weren't for the nurses, aides, social workers, doctor, and deacon. They have been a blessing in both my life and my moms.

My thoughts and prayers are with each and everyone of you.

 
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